Photographs by Laurie @ Horizons Photography

February 29, 2012

For my youngest


Dear Kaleb,

There is not a day that has gone by since you were born that you haven't made me smile with your sweetness, made my eyes light up with your funny little antics or made my heart melt with a kiss or hug. You have a way about you that allows the world to know they are loved. You shine when you are happy!

Today, watching you with your brother, allowing him do untold things to you, and then when he got into trouble and you brought him his monkey to cheer him; it made me proud to call you son.

I didn't know that one day my life would be as full as it is, I had no idea what I was missing, and then I met your Daddy and we had you and your brother. My world hasn't been the same since, and not a moment goes by that I don't know how fully blessed I am to call you three my family.

May your light always shine, your smile never fade and your love of Mummy hugs never leave you. May you be a light in the world that is too often filled with darkness, and may that warmth you spread fill the world with hope and comfort.

My prayer for you as you grow is that you find your heart's desire, your passion, that you dream big and see those dreams become reality. My prayer for you is that you grow into a man devoted to God, to family and to living a full and inspiring life. There is nothing you can't do, nothing you can't dream, nothing you can't aspire to. You are a gift, a treasure, a dream and you will never really know how much you are loved.

Be blessed little man.

I love you Kaper,

Mummy xoxox

February 28, 2012

No answers...

Today my heart is grieving for the senseless loss of life in Chardon Ohio. My heart aches for the family of the 16 year old (Danny) who was killed in this act of incredible violence. With all the things you do as parents to protect your kids, to make sure they are healthy, educated, and grow up to be men and women who respect life and others, and in a moment they can be taken. You send your kids to school thinking they are safe, and in a second they can be taken from you. It's senseless and tragic and leaves everyone affected by it broken forever. WHY?

I know this is not going to be a popular question, but what about the kid who shot these kids? He is 17 years old, too young to be picking up a gun and shooting kids, too young to be so broken and angry to do this. I find it interesting that he chose to turn himself in, was this a terrible cry for help? What will his life be like, what will his parents life be like from here on out? Did he suffer from a mental illness that pushed him to kill his classmates? Was he bullied so badly that he felt the need to lash out in this horrific fashion?

As the town, state, country grieves for this family who lost their son, will anyone grieve the son who was already so lost that he thought his only option left was to shoot the kids he saw everyday at school? Will there ever be a way to find justice for the people hurt or killed in this targeted shooting? Is there any hope?

I can't begin to imagine getting a call from my kids' school to tell me that he's been shot, nothing can prepare a parent for this and the path they are now on is one they never would have imagined, so what do you say to them? What can possibly be done to help them? What can be done to help the parents of the killer? How do you ever walk around in life after your son has done something like this? What do you say to the kids who will forever be changed by the things they saw yesterday? What do you say to the kid that did this?

I have asked this before, but what kind of world is this?

I saw something yesterday (forgive me but I can't remember where) and it said 'Hope. It's a good thing.) I believe in hope, I believe in the power that hope can bring into a life, a soul, a wounded heart. I believe that change is possible in all people, not just a select few and I believe that God is the only hope this world has. So, what happened to this kid that he lost his hope? Where was God? I know that's the question many are asking, it's a question that the community of Chardon are probably asking, and at some point if not now it's a question that the victims and their families will be asking. What answers do we give?

In all of the trials, the sufferings in life, the loss of hope I have myself felt at times, there is one thing I know. We don't receive answers all of the time. God is God, He is sovereign, He has a plan and it's usually not anything we understand. I also know this, we live in a fallen, broken world, one that He grieves, one that breaks His heart,  and no matter what happens in our life, in the lives of those around us, we were given grace at the cross. So that the broken, the wounded, the forever scarred, would have HOPE.

So, today as I watch the news with a heavy heart I can't give answers but I can pray that everyone involved in this heinous season of tragedy will find a way to have hope, will feel peace, and that they will find healing.

February 27, 2012

Complaining or Emoting?


Sometimes being a Mum means that you take on the pain and suffering, in many forms for your child. You hurt when they hurt, you worry for them when they don't understand the need to be worried for themselves and you occasionally turn into a Mama bear on their behalf. Last week Kaleb wasn't himself, he had a few bouts of vomiting but nothing too serious, on Saturday he took a turn for the worse and became seriously dehydrated, to the point that we could see the skeleton bones in his face, chest and back. His eyes sunk deep into his head, his normally chubby cheeks sunk in, making his sweet pouty lips protrude from his face. He was listless and couldn't stop throwing up. At the hospital he was given an IV and treated for dehydration, we were admitted and though neither of us had more than three hours of sleep he began to perk up with as the fluids began to fill his little body again.  His cheeks slowly got puffier, his eyes a little clearer and less sunken, he wanted a drink, and he kept it down. He had an ECG as they were concerned about his heart (my heart leaps at this because this is NOT my heart kid), the nurse was consistently annoyed with him, he was moving too much, he was trying to pull off his IV, he was crying and she couldn't get his vital signs. My Mama bear showed up. He's two, he's scared, he's sick, he's exhausted... of course he's moving, of course he's crying, of course he wants the IV out! I would too!

Now the reason that I am posting this is that in sharing this I was told that I was complaining... (you will remember that I posted a few days ago about being held to account). Let me say this, complaining and sharing frustration is very different. I am an extrovert, when something happens that upsets me I need to share it and maybe that isn't right, maybe it's not the way most people handle things? I don't know. What I know, is that a lot of really cool things happened at the hospital too, we had a great doctor (His doctor was awesome actually, she gave me tips on preventing this from happening again and when she could see that Kaleb wasn't getting sleep at the hospital she discharged us to go home and sleep), we had a great nurse on the Pead. floor, and in sharing the experience of my night in the ER with Kaleb I did mention this as well, I was sharing the WHOLE experience, not just the bad bits, but the bad bits were what upset me, they were the bits I needed to purge. On Saturday night I was alone, I had no one to share this with, I couldn't just pick up the phone at 3am to tell someone I was upset, so I bottled it until yesterday when I could vent.

So my questions arise... what is complaining? Is venting complaining? How do I share my hurts, my frustrations, my anger, my feelings, in a sense, how do I emote and not be seen as complaining? If something good happens, I call someone and tell them, I share it here, I post it on facebook. I don't just emote the bad things, but it seems to be what people hear. So, why is that? Now, I am admittedly a complainer, I do understand this, and it's certainly something I am working on and catch myself on. It's become a habit of sorts... "how are you today Laurie?" is often responded by 'Tired' instead of just saying 'good thanks'. I do know that this is an area to work on, but do I stifle honest upsets, do I not say anything negative? How does this work? What if I am hurt, upset, or just frustrated? Do I just not say anything?

Is this a problem with me, or could it be that the person who thinks I am complaining (that's a general 'person', as in anyone who thinks it) during a time of upset is actually just not willing to really hear me, know me, or love me in a time of upheaval? Could it be that grace can be turned into unloving non-action?

Why am I writing this post? TO VENT. :D (joking)

Seriously, I want to fully understand what people expect from me or from Christians in general? Do I allow the bully's of the world to just do what they will to me? Do I allow them to walk all over me and I am not allowed to say a thing? Do anything? Just because I should be 'graceful' and now, am I being asked to stifle all feelings in a false attempt to show grace? Is it really graceful to be angry with a person, hurt by a person, or frustrated with a person and hide behind a smile? Isn't that just plain old bottling emotions?

The good thing that has come out of this, is that I now know who I can be honest with about my feelings, and who I need to 'smile and nod' at. I realize this sounds like I am angry, and I want to be clear, I am not angry. I am simply trying to learn more about myself, more about what is expected of me, I want to know more about the truth behind complaints and grace, and decide for myself what I believe is a healthy balance. I don't want to be a complainer, but I don't want to be a door mat either.

Just saying.

February 23, 2012

How do you tuck in a superhero?



When I had boys I thought I knew what to expect, I used to live in a community where there was a whole slew of little boys, I babysat them all the time and growing up my best friend was a boy. I knew what it would take to raise boys! I was an expert so to speak...

Once, while in Austria I was staying a friends apartment in the farmhouse near by, I heard a little knock at the door and when I opened the door there was a little boy (a child I loved dearly that we will just call P). So, P was standing at the door, shorts, raincoat and boots that reached his knees (he lived in the apartment above my friend's place). He looked up at me, and said 'Laurie, I got attacked by a chicken' (remember here that we lived they lived in a farmhouse so this is not out of the realm of the possible). I invited him in and asked him what happened. He said (very matter of fact) that all he had done was try to chop the chickens head off. His face, was one of nonplussed confusion as to why that silly chicken would want to peck at him. We sat down at the table and chatted about why that chicken would attack him, and then he told me what he wanted to be when he got 'old'. Interested I asked him what that might be, and he told me that he wanted to a be a Scientist. A noble aspiration I said to him, and then I made the mistake of asking the dreaded question 'why'? His response was simple, 'cause I can blow things up'. With that he got up, scampered out the door and up the stairs to him own apartment. I was left sitting at the table giggling to myself. Yes, I knew boys, I knew what it would take to mother a boy.

Then I had two of them, and let me tell you, raising boys into men is much different than having the occasional visit from a sweet little P.

As you know I have been reviewing books these days, and this month I read a book called 'How do you tuck in a superhero'. From the introduction I was in love with this book! Suddenly I was not alone in the joy of boys. This woman (Rachel Balducci) has five boys! YES, I said that correctly... FIVE BOYS! I can't imagine the antics that must happen in that house! Yet, I don't need to because Balducci walks us through the joys and struggles of raising boys in a funny and open way. Her honesty is refreshing, her stories of life with boys is fun and leaves you realizing that the things your boys do is actually totally normal and not at all the fault of your bad parenting. The way she describes their back yard, well, it makes me feel mildly better about the state of my own. The odd things that boys do, like stabbing dogs with forks, trying to see if your brother will fit in the dryer, wondering what will happen if you stick your dinosaur down the drain, the cookie in the printer or your brother's head under water... I read this book and between laughs I felt a peace settle over me. My boys are normal.

The book is written in small doses, little chapters, easily read between shuttling the kids around, breaking up fights or kissing ouchies. It's written by a mother, for mothers. I really enjoyed it!

As a result of reading this funny little book I am able to relax, enjoy the insanity for what it is and know (thanks to Balducci) that it only gets worse and more dangerous from here on out. My job, is not to cure them of their rambunctious ways but to guide them safely to adulthood (hopefully with some good hygiene as well) and though there will be accidents along the way, and yes even some bad behavior, the reality is that all the decent men we know in the world today were once little boys, and they too did crazy things, drove their mother crazy with worry and with fighting, but in the end, they turned into decent men (with the odd 'annoying men behavior' thrown in for good measure!)

Thanks Rachel for a great read and for sharing those wonderful little lessons on raising boys so that for those of us who are new to this phenomenon called 'boys'  know we are not alone, we are not 'bad mothers'!

"Book has been provided courtesy of Baker Publishing Group and Graf-Martin Communications, Inc. Available at your favourite bookseller from Baker Books, a division of Baker Publishing Group".
 

February 22, 2012

The Dragon Slayer


Last night, I enjoyed a date night with Joshua. We made the trek to the ACC (no small feat in last nights traffic - more on that later) and watched the Leafs tie the game up before Josh announced that it was 'home - now' and proceeded to get out of his seat and leave. We had a great time! He loved the game, loved the popcorn and loved his Flag that he waved like crazy regardless of how the game was going.

A few things happened last night as a result of our date night, a few really cool opportunities and I had to share.

As I mentioned above, the traffic was RIDICULOUS on the Lakeshore last night and in my stupidity I didn't check the reports before leaving. So at 5:45 we turned right on the Lakeshore and at 6:57 we turned left onto Bay (for those of you who don't know that area - it should have taken roughly 10 minutes.  Josh and I started chatting about asinine stuff,we argued and giggled for about 5 minutes just because he was saying he's five and I was saying he was four (very amusing to argue with your Mum I suppose). As the time wore on it was becoming darker, and as it grew dark I heard Josh in his soft voice tell me that he was scared. I was shocked at first, we are in a car together heading to the hockey game, why on earth is he saying he's scared. So I probe (I am learning to get better at that). I ask him why he's scared, and he informs me that it's getting dark, so I remind him all the reason why he's safe and why the dark won't hurt him, and then he says it, the thing I have been searching for months for, the reason he won't sleep!

 'Josh scared dragon', dragon? I ask, what dragon? Is there a dragon in the dark? 'Yes' is his simple reply, but the sigh that goes with it speaks to the relief he is feeling to having shared that bit of information. Like you feel when you expose a bully and are no longer sharing that secret alone. I looked at him in the mirror, wishing this moment was with me holding him face to face so that I could kiss that worry frown away. 'What colour is the dragon Josh?' and his reply was red, his eyes still staring out at the parking lot we were sitting in. 'Where is the dragon?' Was my next question, 'bed' and then he looked at me in the mirror 'no over' and I repeated him to be sure I was right 'He's flying over your bed?' and his smile of relief at being understood was almost tangible. "YES" he practically yelled. 'Dragon flying bed'.

Ahh, my poor little man who has been terrorized by a flying dragon all these months and I haven't been able to help him. I smile at him in the mirror, 'you are in luck then Josh, because I happen to know a dragon slayer!' and he eyes me with curiosity. 'Before you were born Daddy was one of the best dragon slayers EVER, so when we get home I will get Daddy to get out his sword and you point out where the dragon is and we will get rid of him once and for all! Okay?" the happy reply from the back eased my mind for the time being and we went back to worrying about traffic. 

After the game, as we drove down King towards home Josh again said he was scared. So we talked about the dragon slayer some more, but more importantly we talked about the BIGGEST, BADDEST Dragon Slayer (The Big man Himself) and how all we had to do was call out to him and he would come to help us. This was aided when after the game I couldn't find my car (long story for another post when I am in the mood to seriously embarrass myself), so I couldn't find the car and I said to Josh, we need to pray that we find the car and Josh, who was in my arms at the time said 'Jesus, find car' and like a calf to slaughter I walked directly to my car (in a parking garage under the city, through a hall I never should have gone) It was crazy! I packed Josh into the car and whispered, 'you need to pray more, he listens to you' and gave him a kiss. So as we made our way home and talked about dragons and dragon slayers I reminded him of how God had helped us find the car when Joshua asked him, and how much more fun it would be to help Joshua with the pest problem in his room.

As we walked into the house we excitedly told Daddy about the game, the adventures we had and then as Daddy was taking off Joshua's shoes I asked him if he could take down his dragon slayer sword just one more time. We chatted, he got his sword (Josh's flag from the game) and up the stairs we all went, in search of a red dragon. Once in his room we asked Josh where the dragon was and pointed to his bed. Tim waved his sword, stabbed it and finally caught that pesky dragon in a big green garbage bag (he was still alive for those PETA people out there) the bag was moving around, Tim had a hard time keeping the bag closed to get downstairs. Then, when he got outside he released the dragon and we all watched him fly away! One pesky dragon forever gone from our lives (and hopefully our sleep).

As we tucked Josh into bed last night, (with big grins) we asked where the dragon was and this time he pointed outside. I reminded him to ask God for help if he needed to, and that Mummy and Daddy wouldn't let any dragons come back into the house.

I went to sleep last night, more thankful than ANY OTHER time in my life for that hour something traffic jam on the lakeshore last night. It gave me the time Josh needed to share something that has clearly been bothering him for sometime, and it allowed us to help him! Showing him a few things, that communication is KEY, and helps, and that we are here to listen and help, and it opened up the chance to remind him about his friend in God who cares about him, and wants to help him.

All in all, we lost the game (the Leafs that is) but we had the best night ever! Josh is a great date for all you four years ladies in the world... call him in a few (or 15) years.

February 21, 2012

Life with Josh...


Ever wonder what it's like to live with Congenital Heart Defect as a constant in your life? It's confusing, and exhausting. A cold, a flu, a normal behavior, bad day or sleepless night can be side effects of a heart that is failing.  For the past few months Josh hasn't been sleeping well at all, he has frequent wake ups, leaving him lethargic during the day, affecting his behavior and generally making him not as much fun to be with. For months I have been wondering, is his heart failing yet again? (sleeplessness can be caused by heart failure, night terrors or just a childish 'I want my Mummy') Is that T-Valve causing issues again? OR, is it just normal childhood behavior? Do we take him to his Cardiologist, or do we wait? When is it bad enough that we need intervention? On Saturday Tim finally said to me 'I'm worried about him' and given the length of time I have been worrying about his lack luster ways and loss of verbal skills, I took Tim's sign of concern as an even bigger worry. So, on Saturday I began to pray, we needed help but we didn't want to rush him to the hospital and throw a lot of things into question. You see, we were told that if his heart started to affect his daily life then they would need to do further surgery. (replace the T-valve). The kicker, is that when you have a pre-excisting condition like Josh, getting insurance on a trip is very tough, he has to be stable for months prior to any trips, and he can't have anything on the horizon. We have a trip planned for the boys (planned and paid for) to Disney. We have wanted to do this for a while now, but always the big question is when? When is it safe to take him? After his last surgery when the doctor told us we didn't have to come back until June we knew this was the right time. So, if we take him in, even if his heart hasn't changed since the last ECHO, and he's showing signs of his quality of life being affected, then the trip is off. Which is okay if it really is his heart, but what if it's just normal childhood things like night terrors or a bug that he can't get over? So on Saturday I began to pray that God would be clear, that we would get an answer, and soon, on whether or not to take him in for a check. We needed Josh to get some rest, real rest, to see if this was just a lack of sleep, and we needed to know how he was breathing at  night, so I got our futon mattress and laid it on his floor and decided to camp out in his room that night. He woke up seven times, but I noticed it was panicked fear that drove him to scream out for us. The difference with having me there was big, and though he was waking frequently he was easily put back to sleep once he realized I wasn't leaving. His lack luster had mildly changed on Sunday, his verbal ability improved and when I asked him this time if he was scared at night he was able to articulate that he was afraid of the dark. So, we got a night light and drove to our friends place in Waterloo. During the drive he had a good nap, and that night though we were at a friends' house we slept in the same room with him and he only woke once. The change in him was drastic on Monday. He was sledding, playing, and talking more. Last night I did end up on the floor of his room again, but he only woke three times and each time he was easily reassured and put back to bed.

So you see, living with CHD means that anything and everything could be heart related or absolutely normal. If this was Kaleb having these troubles it wouldn't even dawn on us to be worried, we would just slough it off as a phase he's going through, but with Josh it's a constant worry. Is he again suffering from a failing heart?

Josh needs sleep, we have to find a way to get him to really rest for the next while to make sure this is definitely not a heart issue, but things are looking up. The decision of taking him to Sick Kids or not for now is off the table and the tightness in my shoulders is slightly eased. I am learning that living with CHD will never be 'easy', we will always be holding him up against the 'normal' child and wondering what's normal and what's not. We will always see tiredness, lethargic behavior, loss of appetite as signs of heart failure, and we will always wonder, should we be taking him in or are we be selfish by not taking him in? The only thing that will make navigating this path any easier is that we have God to call on for help and answers.

I remember wondering if life would ever be the same after that conversation with the doctor during my pregnancy when Josh was diagnosed... the answer I have gotten? Nope. It will never be the same, it's not easy, but the rewards are beautiful. Our highs are higher and our lows lower than most parents experience, but those highs are AMAZING highs, his achievements are bigger in our eyes, his health is a wonder to us, his smiles seem brighter and when his eyes sparkle our hearts literally warm up in the glow.

February 16, 2012

held to account


This week has been one filled with sorrow for so many people that I know. Reading updates on Facebook, or opening email has been a difficult process because it seems there is just one thing after another, culminating in the very untimely death of a friend's son. As I read all of these things, hear diagnosis's from people, hear about deaths, illness and painful histories of friends I am left to consider my own life.

What I found was this: I have nothing to complain about. I complain too much, and no matter what happens in this life, someone else always has it worse.

In preparation for his sermon this week, Tim asked me what his biggest 'sin' issue was, what was the one area that he really needed to be held accountable. I answered, and then I asked him what mine was, and guess what? I complain too much! I was indignant at first, I am an extrovert, so I talk things out, it's not complaining, it's working through my issues (of which it seems, there are many). However, on closer introspection, I have learned that yes, I complain too much and it's not attractive.

So how do I change? I haven't got the first clue?! I know this, I am aware, and that is a good first step. Second, I have to start with noticing if I am complaining, calling myself on it, then apologize to whoever I am complaining too for being such a bore!

For those of you who have been on the other end of my endless diatribe of complaints, I apologize... For those of you who don't know what I am talking about (well, you are sweet and I thank you for not noticing) :D

Terrible two's are not always so terrible after all...

The after effects of his scratch tests


Let's allow ourselves to be side tracked from CHD for a moment... on Tuesday I had an allergist appointment for Kaleb (my youngest for those of you new to this Blog. Kaleb has always had problems with hives, eczema and breathing. Everything for Kaleb goes to his lungs, every cold, every allergy attack, every thing. He cries too hard, laughs to hard, yells to long, plays to hard and he begins to wheeze and cough. This I am learning is life with Kaleb. He has severe diaper rash that never goes away because he has toddler diarrhea and has been hospitalized because he couldn't breathe and turned blue (thanks to what I believe is asthma - though at this early age doctors are unable to diagnose.) We have had two run ins with anaphylactic reactions, one to his vaccine at 6 months old and one after a dab of peanut butter reached his mouth. So, all this to say that we wanted  him checked for everything and anything that could cause him trouble, we also need his needles up to date because we don't want him or Josh to get into trouble with an illness we could easily avoid with a needle. So, off we went on Tuesday to be thoroughly checked by his allergist. The doctor was fantastic, but immediately noted that Kaleb's breathing was off, we were given an asthma action plan (a step closer to getting him diagnosed). We were given a whole host of puffers and cream for his rash, which I should mention is caused not by the allergies as I had thought, but because of this thing called Toddler Diarrhea (who even knew that existed? - potty training won't be fun).  The doctor had Kaleb hug me and exposed his back for the scratch tests, Kaleb sat as good as gold and though he whimpered when scratched he didn't actually react until the hives started to boil up. The peanut being his worst offender, with all other nuts a close second. A normal reaction to peanuts is a 4 mm hive, Kaleb's measured 35 mm in diameter. Eggs, his second biggest allergy next to nuts was 5 mm. None of this information was new but we learned a great deal about caring for his lungs and his asthmatic symptoms, things we should have known before hand but didn't. I am not really writing this Blog for any other reason that to let you know about my not so happy heart day. The drive home was exceedingly long due to DVP traffic, and Kaleb who was wearing a hot winter coat and pressed up against all these huge hives was pretty miserable. He wasn't to be satisfied with anything, not even a special cookie I brought to cheer him up. Then, when we got home and I was taking off his coat he looked up at me, his eyes still full of tears and he threw his arms around me and said what sounded very close to a jumbled 'I love you', I got about four more good long hugs out him in that moment and once my heart that had melted on the floor slowly reformed I realized that though being two can be a pain for those around a two year old, it's also a real joy, a real pleasure to have the love of that same two year old. He has his moments, but he's still my sweet little Kaleb.

My not so happy heart day, ended up on a happier note after that.

February 14, 2012

The longest hours


Josh holding his bravery beads after his stroke at three months
The day of Josh's first surgery was July 21st 2008, he was six months old, having had two failed catheter attempts and failures the open heart was our only option, we met with the surgeon, talked to the anesthesiologist, cuddled him, held his hand while he had IVs inserted, and then we walked the final steps with him to the OR staging area. I refused to cry, how I wanted to cry! My lungs hurt, my eyes burned and I swear the tears were literally on the cusp of overflowing but I couldn’t give in to them. I wanted him to see me smiling at him, I didn’t want him to know a moments fear. I wanted him to know it would be okay.  The nurse came and took him out of my arms, she took him out the doors to the OR, and my arms felt as empty as the day they took him from me 6 months before. I turned to Tim and let the tears come in waves. It was done, there was nothing we could do, and control was out of our hands.  God would be his only source of comfort now, and he and the doctors were all I had to hope in. We found seats with our families in the waiting room and began the intolerable wait.
Briefly after the surgery started we looked up to see the surgeon standing before us, beckoning us to a private room. My stomach dropped and I felt myself beginning to panic. This couldn’t be it? That couldn’t have been the last time I held my baby right? The range of feelings and thoughts that run through your mind in a moment like that are something not easily looked back upon. I still get chocked up when I relive that moment for you.  In reality, the doctor only wanted to let us know that he would not be attempting the hernia repair. All that panic, fear and heart wrenching ache and all he wanted to tell us was that he couldn’t repair the hernia( a surgery that he needed and we had all hoped could be done under one general anesthetic to spare him more in the end) at the same time. The relief flooding into my heart was so real, so full, that it actually got me through the next few hours with out too many other feelings. We sat and read, we ate, drank lots of coffee and eventually the doctor came out a second time about 5 hours later. The surgery was successful, they had cut the hole where the pulmonary valve should be and would leave it open, this of course wasn’t a permanent solution but by the time he needed to have the valve replaced he figured he would be a late teen or even early twenties and with the rate of science and research who knew if it would even need an open heart. The hole, between the chambers could not be closed (he was just too little) but they cut the flap so that it would help to minimize the fluctuation in his saturation levels, creating a more even flow.  We were told to go have dinner while he was moved to the CCU to recover.
The next few days we found ourselves once again thrown onto a roller coaster, but this one seemed to have no end, and certainly no one driving. Josh’s saturation levels got worse, he was heavily sedated and to the naked unknowing eye he looked dead. We were told that things would always get worse before they got better; we had tried to prepare for that inevitably but nothing prepares you for it. No one can tell you what to expect, and no one can tell you what you will feel. Even those who have traveled the road before you, with children of their own, it is always a separate journey, always different, always painfully lonely. To walk into the CCU and see your baby for the first time after having open heart surgery, to see his scar, the intubation’s tubes, the direct lines, the pacemaker wires, all of it; is one of the scariest, most frightening things to ever see and no one can ever explain, no picture can ever prepare you.
On the Wednesday night things were bad, Tim had to run our small group so I went and found myself once again seated in the empty chapel on the first floor of Sick Kids. I yearned for comfort, I so longed for God’s touch, his words, his promises, anything he was willing to give me. I prayed, I cried and I pleaded, but nothing came, no words. I was met by silence. I prayed more, and I cried. Then at the back of the chapel I heard the door open, I was scared to look up, convinced it would be God Himself come to talk straight with me. The footsteps went the other direction; the person who entered sat in the pews to the side of me and said not a word. My heart hurt, I had so longed for his comfort and I felt more alone than ever before.  It was then, in that moment that the person stood, came to me and gently touched my shoulder and sighed ‘oh my’ as if feeling every ounce of my pain, joining me in it and knowing that words couldn’t help but that a soft touch and a whispered heart felt sigh might bring some small measure of comfort. I never saw the face of that person, I don’t know if it was a man or a woman, but I can still close my eyes and feel that touch, hear that sigh, all the way to my core because in my heart of hearts I know without doubt that that person was sent by God in my hour of need to offer nothing but comfort.  I went to bed that night and began to talk privately, intimately with God again, sharing with him all my fears, my doubts and my odd theology around suffering. I wrote the prayer down because I was simply too tired to think clearly and I wanted to be clear, I wanted to know that God would not only hear me but also fully understand me.
“Father,
I feel like I have lost the ability to pray, I have no comfort from you. This just seems to get harder and harder. Since the moment we had that first Fetal ECHO I have been praying for a miracle of healing for Josh and you don’t seem to want to give it to us. Instead of healing him he just seems to get worse, culminating in this surgery and now these new complications. I am so confused Lord, and so tired. He’s such a sweet baby Lord, please, please, please heal him. Lord, I am praying boldly, turn this around for him, for us. You are the only one who can heal him now; I am begging you to do that for us. I trust you, that you have a plan for Josh and Tim and I know that there is, hidden somewhere in here, a purpose, even if we don’t see it now. Father, if I am honest I have to say I don’t understand. I find my faith lagging, and I am scared that it’s my faulty faith that is the reason Josh hasn’t had his miracle yet.  Please, show me, talk to me, don’t be silent in this, I need you more now than I have ever needed you before. I need so badly to feel like we aren’t alone in this, that you are sitting in the CCU waiting room with me, that you are near his side, offering the comfort that I can’t.
I am so tired Lord, and I can’t concentrate on you, I can’t pray without falling asleep, I can’t hear you father. I need you to YELL, scream, and do whatever you need to do in order to get my attention. Please Lord, tell me something, talk to me, and heal my son Lord, Help Joshua.
You have always answered me when I have prayed. You have never let me down, please answer me now! Don’t leave me hear alone in this place, tonight Lord, now. Sit with me, hold me, comfort me, this place is dark and scary and I don’t want to be alone. Answer me Lord, hear my prayer and have mercy on me!
There are so many concerns with Josh Lord, heal his bone, ease the pain that it causes him, fix his valves, close the ASD, Lord I beg you to lift his SATS so that a new surgery isn’t needed. You are my only hope, the doctors are about to give up on him, please God, please, step in now and do something. I own your promise that nothing is impossible for you, this is not impossible, you can fix this. Please Lord, please fix it.
I am sorry Lord, I am sorry for the anger I am feeling, for the hopelessness and the lack of faith. I am sorry for the doubts and for the selfishness. Most of all Lord I am sorry for trying to go through this without turning to you sooner. Forgive me for the ways I have failed you, I am so sorry.
Help me to believe, give me faith Lord where mine has failed me, and Lord I pray that you grant us peace, regardless of the outcome I know we will need your peace. Help me to be the mother I need to be, the mother you created me to be, the mother that you entrusted with the care of Joshua. If you take him Lord, if this was only a temporary stop for Josh, then I ask you to help me strong enough, to find the strength of character, the gift of hope and peace, and help me to find a way to continue, and Lord, help Tim and I find a way to move through it together. Father, in all the chaos help us to see your face and feel your arms. I miss you voice, I miss your strength and comfort. I miss your guiding hand.
On Thursday morning, despite not being off the O2 yet and not doing very well they moved him from the CCU to the step-down unit on 4D. Tim and I were thrilled, this is  a graduation of sorts and it means things are looking good( the job in 4D is to get your ready for home. We both took a giant sigh of relief and the nurses and Tim convinced me that I should go home, shower and get some rest.  We slept well that night, my heart lighter for the burdens I had left at the cross the night before, and the knowledge that God was indeed looking after our son. I suppose that is what made Friday morning that much harder, that much more painful. We arrived at the hospital with smiles on our faces and rested and ready to face the new day. We walked into the step down unit and heard a symphony of alarm bells and whistles. Nurses and Doctors surrounded Josh’s bed and when I saw the monitor his saturation levels were so low that I made a joke about it, saying ‘is the machine broken’.  Our cardiologist, Dr. R, who under normal circumstances is very light hearted and fun turned to me with worry in her eyes and said ‘I am afraid not’.  I stood there helpless while they worked on Josh, Tim and I holding hands so tightly that I can’t imagine we had any feeling left in our fingers. Questions flooded my mind but I was too scared to distract anyone so I couldn’t ask. What had happened? I had been home sleeping, resting, light and easy while my son lay here struggling to live? What does that make me? God, where are you? You are supposed to be here. Why aren’t you helping him? White hot rage filled me as I watched my son turn a bluish grey colour unnatural in life. His core was all that still had shades of pink.  They stabilized him and Dr. R had the nurses put Josh into my arms to keep him calm. I held him, fear coursing through every vein that this might be it. This may be my last chance, tears filled my eyes and fight them though I tried they still fell. Never had I realized how much love I had for this little man than in that one singular moment. I didn’t think I would be able to let him go.
Dr. R bent down beside me, she explained that during the first surgery the doctor had cut off a flap that was on the hole between the chambers, that he had hoped it would even out the pressure and blood flow. It instead caused the hole to become too large, and therefore his blood was not getting nearly enough oxygen; in her eyes too I saw tears as she said ‘I’m sorry, we need to go back to OR. It’s a risky surgery but I don’t know what else to do for him.’ In my heart I knew what she was saying. That he wouldn’t survive a second surgery in his weakened condition, but they had no other options. Her tears, her apology were not for the surgery but for our loss.  She then left us, in order to get the team of Doctors from CCU and begin prepping him for an emergency surgery. They asked us to leave the room and we began to make the calls to our families. I spoke to my Mom, and in her voice I knew that regardless of me not saying it, that she knew this was it. There was no way he’d make it this time. It was over, she and my Dad got in the car to make the journey to comfort their daughter over the death of her son. It was not about Josh anymore, his fate was sealed.
The doctors came and retrieved him, bringing him to the CCU in order to prep him. One of the doctors came out to talk with us and said that he had to sedate him to get the tubes in because he was fighting so hard. This child, who everyone was about to write off, was fighting so hard that he had actually pulled out his direct line. It gave me the courage and the hope to pray harder, to once again boldly ask for that miracle I had lost hope in yet again. This was an impossible situation was it not? Could I not ask for him to do the impossible? We were told that they would be taking him to the OR as soon as they could, but hours passed and we had heard nothing. Finally at Four o’clock pm that afternoon the CCU doctor came to us in the waiting room. His words gave hope.
“We don’t want to take him into surgery, we have been in meetings discussing his case and we have agreed that we want to keep him sedated over the weekend and on life support to keep his saturation levels stable, and we want to think it over, make sure it’s our only option.”  I felt hope, that maybe this wasn’t the end; maybe we would see his smile again. Maybe in this delay, in this time to seek more options God would do the impossible.
That weekend was the longest weekend of my life. We sat on a precipice and one move in the wrong direction, one swift wind and we would fall over. I sat hour after hour by Josh’s crib, staring down at his lifeless body, blue but for his torso. Holding onto his cold blue fingers and I didn’t stop praying. I didn’t stop fighting on his behalf. We nearly lost him a few times that weekend, at one point due to his medication.
Tim and I found ourselves again the Sick Kids chapel, the Saturday night of that dreaded weekend. We talked, cried and held onto each other, Tim looked up to a piece of art on the wall, of a master with his sheep, and he said.
 “Josh isn’t ours to hold, he’s been given to us on loan, to tend and care for, to raise, but he is not ours. We have no ownership of him. We need to give him back to God, we need to let go”.
Oh how those words struck me to the core, how they hurt and yet I knew he was right, Josh was my son but he is not MINE. He was indeed on loan to us. This gift was simply that, a gift, for whatever time we had with him. If we tried to hold on to him, we would ultimately smother him and ourselves. We had to let go and trust God to do his mighty work. We sat and held hands that night and prayed for our son, and then we let go together of the control we so desperately wanted to hang onto. We dedicated our son that night, to God's keeping. We gave him back in the only way we knew how and we prayed for the strength to survive the outcome of that decision.
Monday morning loomed before us, my hopes and prayers and desires for a miracle all came down to this day. To the meeting that the doctors were going to have that day, nothing before or since has mattered more than that one meeting. I think that God was inundated with prayers that weekend, from literally all over the world, all for the sake of our son.
I mentioned once that we named Josh at the 19 week ultrasound, when we discovered we were having a boy,  and looking back we both feel that God named him. Joshua, means GOD SAVES. That morning, through a consensus of doctors and experts it was decided to attempt a test procedure in the Cath. Lab, with a new device (an occluder) they would implant in the hole and allow tissue to grow over, hopefully closing the hole completely.  It was a test, when they got in there they could have trouble and discover a need for surgery, but it was the only hope that Joshua had. We signed consent and began to pray earnestly for God’s miracle.
Just one hour later the doctor doing the procedure came to see us, the test had gone well. The hole for the moment was closed and his saturation levels were holding steady. He smiled and told us we could go in and see him if we liked. What we saw that day was what can only be described as a miracle of a magnitude I won’t soon forget. For the first time in his life Joshua had pink skin, his cheeks were red and healthy looking, his arms and legs which had spent the weekend cold and blue and lifeless were now limbs with rich red blood flowing through them.  Our son, given to God, had been returned to us.  We rejoiced that day and every day that we have with him we rejoice and do our best to give the glory back to God.
What does this have to do with CHD awareness? The device that was implanted in Joshua's heart, which remains there today, is a new gift from the research being done on CHD. Five years ago this device would not have been an option for us. Five years ago, (at the time of surgery) would have been the day we lost our son. July 25th 2008. With awareness, comes funds, with funds, comes research, with research comes hope and with hope, with hope you can do anything!   

February 13, 2012

Happy Heart Day

Joshua - 19 weeks


Once upon a time, in a world not so far away. Valentines day meant chocolates and flowers, romantic dinners and beautiful words written in a Hallmark card. It was nice, I think on it fondly and we still celebrate in this house, with cards and small gifts that show that we love the family we are a part of. You see, my heart is so full of love that one day a year can't possibly be enough to tell these three men how incredible I think they are, nor how blessed I believe I am.

However, Valentines day is also a day for us to do our best to tell you about CHD, as you all know by now. Heart day as it's come to be called in the world of Heart Moms is day to tell your friends, your co-workers and anyone else who will listen about our little warriors, the battles they face, and how we hope to one day win the war.


Have I ever told you how they detected Joshua's heart defect? I went to the regularly scheduled 19 week ultrasound to discover if this little person growing inside me was a boy or a girl. We were so nervous that day because secretly we both felt like it was a boy, so were prepared for that, but we were terrified that if it was a girl we would feel disappointment. We had names picked out for both sexes of course, Joshua and Kiera. As I Lay on the table being prodded right in the blatter I could have sworn she said 'she' when talking about the baby. I closed my eyes, trying hard to change the image in my mind of the little boy I thought I was carrying to the little Kiera I was carrying, I just couldn't picture it though. I had been so sure we would have a boy. Then the tech turned to Tim and said 'see this?' and Tim looked, he smiled and said 'is that a package?'... and the tech. laughed and said 'yes, that's his package' with a small smirk. Somehow I had heard wrong, Kiera faded into the mist and Joshua became rooted in my heart.

A few days later our midwife called, it seems that during that ultrasound they had found that the umbilical cord was a two vessel cord, rather than three (two input and one output). She said we would need a deeper 'stage 2' ultrasound at women's college. The two vessel cord is often a sign of either kidney problems or heart problems she had said, but it could also be absolutely nothing to worry about. I held onto that tidbit of information and other than making sure I was at that appointment I didn't think of it again.

The stage two ultrasound was pretty much like the first, we had it confirmed that Joshua was indeed a boy and Tim and I chatted about inconsequential things while the technical worked.

A few days later Tim called me at work, the midwife had called him he explained. They are seeing an enlarged (ballooned) right ventricle. A fetal ECHO would be needed to assess what we were dealing with. Again we were told that it could be nothing and though mildly concerned we again went about normally without stressing too much about it.

An excerpt from my journals at the time

'The morning of our fetal ECHO dawned and we went to the hospital feeling hopeful and light in spirit. This was going to be nothing! We chatted with each other through out the procedure and watched Joshua’s heart beating with rapt attention. I am not a doctor, nor am I an x-ray technician but his heart was beating, that was good right?! After an hour of pushing and prodding at my tummy the technician stood up and said that he would show the pictures to the doctor and then we would be finished unless they need more pictures.  Tim and I sat in the room, Tim spinning around on the technician’s swivel chair in boredom and me quietly feeling the bumps, kicks and hiccups of my son. Tim wandered around the area, and came back after a few moments to tell me about a small room across the hall ‘ it’s so sad’ he said ‘there is a table, a couple of chairs, a model heart and a box of tissues’. The doctor and technician came back, they would need more pictures so I assumed the position and they squirted cold jelly onto my belly once more. Tim took up his spot at the foot of the bed and we shared a look of trepidation. They finished the last few pictures and told me I could get dressed, then they asked us to wait in the waiting room, or at least that is what I heard. We went to the waiting room and the Doctor said ‘no, in here please’ and he directed us to the very same room that Tim had seen in his earlier perusal of the area. We were now the people sitting in this ‘counseling room’. The model heart was the most prominent feature of this room, that and the box of tissues are all that I really remember. Although, thinking back on it, I remember that that room was one of the smallest rooms I have ever been in, the walls were so close, and the air seemed so thin.
The Doctor came back in; he smiled and introduced himself, shaking our hands. He must see that my hands are shaking, that my skin has become clammy. I find myself feeling slightly embarrassed about it. Tim made a joke, something about the room but the doctor doesn’t smile and it makes the knot in my stomach grow tighter. Then he starts to talk and I am lost in the scientific words that make up the heart of my first born. Something about valves, large muscle mass, possible death, very serious, high risk pregnancy.
What was actually said was something like this: Pulmonary atresia with intact ventricular septum (PAIVS) is a rare congenital cardiac lesion characterized by heterogeneous right ventricular development, an imperforate pulmonary valve, and possible extensive ventriculocoronary connections. Prognosis and management depend on the degree of right ventricular hyperplasia (including tricuspid valve hyperplasia) and the dependency of the myocardial blood supply on abnormal communications between the right ventricle and coronary arteries.
I am lost in a sea of practical matters that don’t matter at all. ‘Will I be able to keep my midwife?’ No, I am being reassigned to the special pregnancy unit at Mt. Sinai Hospital. ‘Will I be able to take him home right away?” Not likely, he will need to be transferred to Sick Kids Hospital following his birth’. “Will I be able to breast feed right away?’ Possibly, they will let you if they can.” What I really wanted to know but was too afraid to ask was “Will my life ever be the same after this conversation?’  Tim asked all the right questions, the ones that really matter, he seemed to understand what was happening, and he seemed to be calm in this raging wind that kept knocking me off balance. 
Looking back on this period in our life, at that day in particular and it's all foggy to me, the memories so distant and misty. It stole the excitement from our first pregnancy and turned it into a question mark, filled with fear and worry. However, it allowed us the opportunity to know Joshua, to watch him grow. '

You see, there were other complications with Joshua's health, and with the pregnancy, things I won't get into here for fear of seeing this post turn into a HUGE post. However, it meant that we had a number of scares along the way that Josh would arrive too early. On January 1st 2008 I was taken to the hospital and told we would be having the baby that night, until the pediatrician explained that there was no way a baby with his heart defect would ever live that young outside the womb. They injected me with steroids to help his lungs and though we had a scary week of 'we have to take him now's'... he didn't come. Instead he came three weeks later via an emergency C-section. Those three weeks bought him time, they allowed his lungs to develop just that little bit more, they allowed him to gain just that much more weight. I have shared his birth story before so I won't do so again, but I will tell you this. Early detection saved the life of my son. That is fact, that's just one more important thing you need to know about CHD. The earlier the defect is detected the better the chances that child has of living to see his first, fourth, 20th birthday. 

Happy Heart Day!




February 10, 2012

No, it's not fixed.

Josh and the big sister of another Heart Warrior who befriended him during his last surgery


Today I have some 'Mummy' time, a rare treat but one that I relish in. Yet as I sit here I find myself researching for CHD awareness month. I read one heart Mom talk about about what CHD means to her... a line struck me. She said CHD means that my kid is amazing, miraculous, brave, strong, wondrous but not cured. I let that sink in and in an odd way I was touched by it. It's so true, Josh is a lot of amazing things but he is not cured. I think it's one of the most important things for you to know about kids with CHD, because though they run and play and laugh and smile and giggle and fight they do all of it with a broken heart.

I cannot count the times that Tim and I have been asked 'is his heart fixed now then?' after every surgery we have to again explain that 'no, it's not fixed'. The best that anyone can do for a child with CHD is to 'buy them time'. Josh has been bought time, tax dollars have bought him time, but as of yet, they have not bought him the guarantees that so many people want.

The words 'no cure' were a shock for me when I heard them the first time, in fact it wasn't until his second surgery that I really began to understand that there wasn't a cure for what ails Josh. I was in denial I suppose. After every catheterization, after his first surgery and even in the immediate days following his second surgery I believed that this time it would work, this time they will 'fix' his heart. Tim jokingly calls me unrealistic, while I call him a cynic, but the real truth is I was an eternal optimist living in hope and expectation and yes, in full and utter denial. CHD has NO CURE. There is no fixing his heart, it's forever broken, it's never going to be 'normal', he will never grow out of this disease, and when all is said and done it will probably the murderer of my son. Knowing this, facing this, has been a journey unto itself. 

Knowing that the only way my son will ever have a whole heart would be a transplant, that is something that breaks my own heart, and yet as 'heart moms' the world over know, there is not a moment that we would trade. These are our children, CHD can strike any family, any time, and the more we get the word out there that this viscous killer is looming, ready to snatch our children, the more hope we have that one day there really will be a cure, or better yet prevention.

I have been blogging all month about CHD awareness, I have been posting stats. on facebook and working with organizations trying to get the word out, trying to get people to stop and become aware, because with awareness comes hope, and with hope comes research, education, answers. I am not trying to ram this down your throat, I am simply hoping that you will join me in this fight, I am not asking for money, I am not asking for more than a few moments in your life. Share this post, re-post it, read up on CHD and what it means to kids like Joshua.

As I struggle with raising awareness I have never felt more alone, more frustrated than ever before. I won't give up, I won't stop until I know that I have done everything I can to help kids like Josh, those here and those who are not yet born, so that when they turn 18 they aren't forgotten to a system not ready for them, so that the need for repeat surgeries is lessened, so that the scars they wear are badges of honour in other people's eyes rather than something to stare at at the swimming pool or beach, so that less kids need to die at the hands of this monster.

February 9, 2012

is he three yet?


I have come to the realization that having a two year old is God's way of preparing you for the teen years. This has been a slow dawning for me, but today cinched it. Kaleb, the sweet little boy that I have often Blogged about in the past, the tender little man who loves his snuggles and hugs, the baby in the family has almost totally disappeared and in his place to my surprise is a sullen two year old. (Almost as if he hit puberty far too young). He has the demands that all children do, out of his mouth is a constant stream of 'Mummy', yet even if I meet those demands I will most likely still find a way  to do or say something that will displease him.

Now, I love this kid, let's not mistake that. He still has those sweet moments (just as a teenager still has some 'good' moments (like when you give them the new item they have been harassing you for). It's not that I am even really complaining. Josh too went through this horrendous stage that we at the time thought would never end. He's out of it now and actually quite a pleasant little man. Kaleb, well, he's in the throws of one very long temper-tantrum.

The fun part of this stage (did I just say fun?) is that he is still sweet little Kaleb on occasion, so when he emerges, or I catch a glimpse from a distance, I smile because he's still there. I will hear him playing with his toys, making his cars drive all over the furniture or floor, the inflection in his tone telling a tale all it's own, or I will catch him off guard and get a hug, or on the rare occasion I will see him snuggle the dog (yes, the same dog he tried just a few days ago to stab with a fork).

I have had great insight into both my boys as we travelled through the terrible two's with them. I can see them as they will be, their personalities are emerging and though at times it's not pleasant, it's still a very exciting thing to watch. Josh was our strong silent type. He used to have some serious meltdowns (something you wouldn't believe until you saw them) but if I picked him up, put him in a chair with his monkey and bunny and a book he would calm down and read by himself for as long as it took to make him feel better.

Kaleb, he's more demonstrative (a drama king! - much like his Mummy). If he get's mad, houses on the Danforth could hear him. His high pitch screeching can cause dogs in the cottage country to howl and look out if he's holding something because it won't take long for the said item to become a projectile and his aim is pretty good! However, when the 'mad' hits, if you ignore him, he stops, comes over to you and say's 'Mummy - look' and he'll do his best to win back your attention.

They are so different these two mystical beings called boys. One, desperately needing alone time, the other just needing your attention.

When I put them to bed tonight (after a day of terrible two tantrums) it dawned on me... this is what being 13 will look like for them. Thank God the terrible two's don't last as long as the teen years!

February 8, 2012

Sick Kids

Labatt Family Heart Centre  



I have been hearing about Sick Kids since I was a little girl, I have seen thousands of commercials raising funds, I have gotten all the brochures for the Sick Kids lottery. Yet, until I was booked into the Fetal Echo lab at Sick Kids I had never really thought too much about it. The hospital ads, the lottery, the stories, they all seemed so far removed, it happens to other people. Knowing that it can happen to you changes things. When Josh was born he was stabilized at Mt. Sinai and then rushed to Sick Kids, and I began to learn about this amazing hospital. The staff, some of whom have gotten to know Josh and us very well are warm and loving. The have on occasion even heard we were in the hospital and come looking for us to say hi. They are specialists, in not just Cardiology but with kids and with parents. The information I am giving you today (again in honor of CHD awareness month on this Blog) is about the Labatt Family Heart Centre.

The Labatt Family Heart Centre was established in February 2007. The extraordinary generosity of the Labatt Family allowed the former Cardiac Program to move forward with a series of important internal initiatives, funding the redevelopment and future activities of the Heart Centre at The Hospital for Sick Children.

VISION

We will be the best paediatric and congenital heart disease centre in the world. CURRENT STATE  The Labatt Family Heart Centre brings together significant interdisciplinary and interprofessional activities within Paediatric Cardiology, Cardiovascular Surgery, Cardiac Critical Care, Cardiovascular Research and Adult Congenital Heart Disease programs, thus allowing the Heart Centre to address the needs of patients and families from fetal life through to adulthood.

The Heart Centre at SickKids promotes these activities through seamless integration of research activities, academic performance and exemplary clinical care.  Membership within the Centre consists of SickKids' clinicians, researchers and educators from nursing, medicine, surgery, perfusion, respiratory therapy, physiotherapy and occupational therapy, social work, child life, diagnostic imaging technologists, and pharmacy. Additional membership is drawn from outside SickKids and includes adult cardiologists from the University Health Network (UHN), Mount Sinai Hospital and Hamilton Health Sciences as well as paediatric cardiologists in London Health Sciences, McMaster Children's Hospital , Children's Hospital of Eastern Ontario (Ottawa), and Kingston General Hospital.

Key linkages with other proposed centres (Genetics, Cancer and Blood, Healthy Breathing) will further enhance the integration of the Heart Centre within the framework of the larger SickKids Community.  Many other professional and ancillary groups participate in Heart Centre activities with a greater or lesser clinical, research, and/or administrative relationship.

Cardiac Imaging, while remaining under the auspices of the Department of Diagnostic Imaging, is an integral part of the Heart Centre, as is Cardiac Anaesthesia, under the Department of Anaesthesia. Similar healthy collaboration exists with the Division of Genetics, the Division of Respiratory Medicine, the Division of Neurology and virtually all of the other subspecialties.

The complex nature of congenital heart disease and its genetic and syndromic associations require a multidisciplinary and collaborative approach.  We are the largest member of the Pediatric Cardiac Network of Ontario (PCN), a provincial forum which has become an important part of the organization of children's cardiac services in Ontario.

Through this forum, via a variety of means, i.e. regular telehealth conferences with cardiologists and surgeons from London, McMaster, and Ottawa, referral of patients, discussion of problems, and regular patient follow-up are all achieved between the groups.

There is also a network of community Cardiologists within Toronto. Each of these individuals work in a collaborative and supportive manner. Several provide part-time echocardiography staff coverage within the Echo Lab, and all attend our clinical meetings for continuing medical education, referral of patients, and development of research studies. New patient referrals to SickKids, and known patients requiring pre and postoperative follow-up, are triaged to our community cardiologists along well established guidelines, significantly reducing the outpatient work load at SickKids.

FUTURE DIRECTIONS

Our vision of premier international excellence is based on the four pillars of our mission:      Unsurpassed, measurable patient outcomes     Innovative, practice-changing research     Superb education, training and quality of work life     Exemplary patient and family satisfaction

Feel free to visit the website, learn about what great things Sick Kids is doing, and how you can get involved!

Upcoming Events for Heart Month:  (At Sick Kids)

A blood pressure reading, is what you’re needing,For a healthy start, to loving your heart!

1)February is Healthy Heart Month and Occupational Health and Safety Services is holding their annual Blood Pressure Day Clinic on Monday February 13th, from 11:30-13:30 in the Garden Patio.

Please join us for a healthy snack and a game of Nintendo Wii while you wait to get your blood pressure checked.  A Registered Dietician and a Pharmacist will also be available to answer your heart related questions.

2) Show the Cardiology Technologists some love by attending Heart Centre Day on Feb. 14 from 10 a.m. to 3 p.m. in the Garden Patio. Come out and have some fun and learn about the great work the Centre is doing. Kids can bring their teddy bears for a heart checkup

February 7, 2012

Boys

The beauty of boys can sometimes get lost on me, I love them, they are wonderful, but do I really understand what having two boys means? I am starting to clue in, every once and a while (about a thousand times a day!) it hits me... I am the mother of two boys.

Let's start with the obvious. How many times a day do I say 'stop punching the dog', 'don't hit your brother', 'can you get along for two seconds... that's all I am asking for, just two seconds!'... it's a daily montage of life with boys. The physical brutality that these two exude is beyond my understanding. The constant battles, the bashing of heads, bruises, black eyes (of which both are now sporting), the cuts, scrapes and other minor injuries that they inflict on each other is something I just never had to deal with as a child, adolescent or adult until of course I had these two wonders enter my world.

Tim, he gets them in ways I can't understand, he'll say to me 'This is life with boys Laurie' and I get the feeling that it will only get worse. The stronger they become the bigger the injuries. Tim tells me horror stories of the fights he had with his brother and I cringe. Now, let's not make the mistake that girls are better, I have memories of my sister and I going at it verbally and there is a part of me (of which we won't ever tell the boys for fear of them thinking that fighting is okay) that is thankful I don't have to listen to the constant diatribe of 'she said I was stupid' or 'Mummy, she took my toy'. However, to see a girl on Sunday, dressed up in her pretty little dress, NOT sporting a black eye or bruised knees I have a small little pinch of envy for the mothers who are raising them.

The next most obvious difference to raising boys of course is the manner in which they play. I have never seen kids trash things like I have seen these two destroy their toys or the room in which they are housed. Cleaning up after them is a full time job in itself, forget trying to actually do something productive like clean the dishes, wash the floors or any of the other countless jobs that need doing in order to keep this home looking like more than a bachelor pad. Toys in this house get thrown in all directions, at any number of objects (including the dog). How many times have I gone into our 'playroom' better known as ground zero in this house and felt like crying because the mess I just cleaned and organized so nicely the night before has been trashed yet again. This is again the time that I point out that on Sunday morning when I pick up the kids from the nursery there is always a few little girls (all donning their pretty pink dresses) playing so sweetly with their toys, pretending that their doll is going shopping or that the car is driving the kids to school.

Just a few weeks ago we were at the Leafs game (thanks to the Starlight foundation) and at the end of the period the boys raced around the box (we were in the players box and I am sure we won't be re invited) tackling each other, thumping each other, chasing each other and generally wreaking havoc. As this was going on a family came up the stairs, a Mom and Dad and two pretty little girls. The parents (the Mom in particular) looked at our boys with eyes the size of the moon. Even their girls watched in awe at the two monsters (better known as Josh and Kaleb) tried all their wrestling moves. It was an impressive display to be sure, and all I could think is how numb I have become. Not so long ago I would have seen this and thought 'what kind of parent allows this behavior?' I of course, didn't realize that one day I would be the parent!

As I write this I have had to break up two fights and ask Kaleb not to stab the dog with his fork.

Should I even begin to describe meal times around this house, or what the toilet looks like when Josh is finished, or the amounts of football, I will have to endure in my lifetime?

Yes, boys are a wonder... and no I am not sure I will ever get used to the craziness that has consumed our lives though I wouldn't trade them, I would happily trade the behavior at times.

February 6, 2012

Christine

This Blog has been a space of solace for me; I have found hallowed ground on which to share Joshua’s story and my faith journey as we travel this road with him. What I did not expect however was that I would meet so many wonderful people as a result. I didn’t plan on hearing so many heart warming and touching stories of people and their sufferings, their pain and yet still be able to see their undeniable love of God. I did not expect that people would join in this journey with us, holding our hands as we all head down the road together. It has been a true honor. Thank you.



I want you to meet Christine, whose mother is one of the many people on this road of life with us.

“My daughter died at 33 years of age from Heart Disease. It was a sudden death, preceded by no symptoms. It was August 14th, 2004”   

Carol writes in an email to me and I can actually hear the pain in her words. How do you even begin to tell someone about the day your daughter died? I continued to read the story, tears already in my eyes.  Christine was on a holiday with her partner and her then 11-year-old daughter Carley; they stopped in a store in Ellsworth, Maine to get Lobster to bring home.  She collapsed in that store, and though they tried, five doctors could not revive her. She was pronounced dead at 6:00 pm that night.

Carol, Christine’s mother was just arriving at Christine’s sisters house in London Ontario, when she received the call that would break her heart and change her life. The mother and daughter got into the car and made the long journey back to Oshawa, trying desperately not to cry so as not to be a danger on the road.   “I remember thinking; this has to be a dream and I will soon wake up, but it was not a dream.”   Practical issues needed to be seen to, harsh realities faced. How did they get her home? When? The coroner needed to preform an autopsy, delaying Christine’s return home. Flights were arranged, her organs were donated, and finally on Tuesday August 17th of 2004 Christine was brought home. Her funeral was days later, on the 20th of August.

“I felt like I was floating through these days of mourning and grief. Only God and His loving compassion sustained us. So many people came to the funeral home to give us their love that the line was all way out of the room and out the door of the funeral home. The church was packed with all who loved her”  

Carol, like so many other people who have felt the devastating impact of heart disease had no idea why this had happened. Christine had been a young, healthy woman who exercised, took long bike rides, took dance lessons her whole life and ate healthy. How had she died so quickly, with no warning, and so tragically young?

When writing Christine's story I asked Carol what her daughter enjoyed and loved in life she responded with this:

  "My first thought is her daughter Carley whom she loved immanency. Christine had Carley as a single Mom.  It is  hard to remember these things so let me try. Her black Jeep that she had bought one year before was certainly a joy in her life and her daughter purchased one almost the same just last summer. She took Carley and Terry (her partner) on  rides through mud trails where they would come home covered in mud but laughing!!  She loved to cook too and so did her husband/partner Terry. She loved to dance. She took ballet, jazz, and tap as a teenager and was taking belly dancing when she passed. I have a movie of her during a recital that her class did - they were all mature women and Christine was working with another dancer to do a duet but it was never performed. This woman spoke at her funeral and so did her dance teacher. She had just purchased 2 taxi plates and was running 2 taxis in the same taxi firm (City Wide Cab) that my husband is part of owner here in Oshawa. My husband tells me she was obsessed with becoming a strong business woman and she spent every Sunday afternoon with my husband in his home office discussing and figuring out her business strategies etc. Actually I would say Christine loved life! She loved nature so much. We camped in Provincial parks as our summer holiday every year and Chris carried this on too. She treasured going for long bike rides and walks outside especially along the lake shore. The house she purchased was one block north of the entrance to the bike path extension that follows the lake shore at the Whitby entrance. So her house was a great prize for her as it connected her closer to nature. It backed onto open fields belonging to Whitby General Hospital that extended down to the lake where the Ontario Psych Hospital is located."

It was a year later that the family finally received some answers, and those answers in some ways brought some closure but also many more questions.  Christine had Arrhythmic Right Ventricle Dysplasia; ARVD stands for Arrhythmogenic Right Ventricular Dysplasia. Arrhythmogenic means causing an arrhythmia. The right ventricle is the chamber of the heart that is affected and dysplasia means there is an abnormality of the structure. ARVD is a specific type of cardiomyopathy (a disorder of the cardiac muscle).  Simply put, ARVD is a genetic, progressive heart condition in which the muscle of the right ventricle is replaced by fat and fibrosis, which causes abnormal heart rhythms. ARVD is estimated to affect one in 5,000 people. The disease can affect both men and women. Although it is a relatively uncommon cause of sudden cardiac death, it accounts for up to one fifth of sudden cardiac death in people under the age of 35.

This is a disease that can be managed, with early detection lives can be saved; in fact, if caught and treated very few people will die from this disease.  Dr. Hamilton at sick kids is making proposals to the Health Ministry to have all children who are entereing serious sports to have an ECG to check for this disease. Of course an Echocardiologist would have to read these ECGs too but so far they are not yet willing to fund this.

Christine’s death does not need to be in vain, the point of this month is about spreading the word about all types of Heart Disease and CHD’s.  We can’t help those we love if we don’t know what lies in the shadows.

"I will never forget what she said or what she did, but what people remember is how she made them feel. She had a way of putting people at ease with her gentle loving way. People loved her. I loved her.”

(Since posting this an error was noted by Carol - this is the following information that she has passed along to me) I do apologize for getting this wrong. Please note:

The cardiologist that Dr. Hamilton is and those who would have to read the ECGs is an electrocardiologist not and echocardiologist. Actually he is referred to as a
Cardiologist who specializes in electrophysiology of the heart. ARVD is a disease of the electrical system of the heart. The electrical fibers (Purkinje fibers)
Run through the Heart muscle therefore this comes under the heading of a  cardiomyopathy (myo means muscle and pathy means disease)

February 5, 2012

Cardiac Kids


Team Sick Kids at the world transplant games!

 We first heard about this organization after Joshua's second surgery, since then they have been a support to us, providing fun things for us to do as a family to forget for a moment that Josh is anything more than a normal little boy. They are out there raising support so that kids like Josh can find each other and not feel so different after all. As we move through February and CHD awareness month on this Blog I am happy to include this amazing charity and highlight the things that they do for us, but also for the many other families affected by CHD. The money they raise goes directly to the Cardiology ward at Sick Kids, directly helping Josh and the kids he has gotten to know through Sick Kids.

Cardiac Kids is a volunteer group established in 2000 to raise much-needed funds for children who are suffering from congenital heart disease. 1 in 100 Canadian children are born with a congenital heart defect and more than half need surgery to survive. More than half of the patients who require surgery are under one year old, and almost a quarter are less than a month old. Congenital Heart Defects or CHDs are the most common birth defect.

Funds raised by Cardiac Kids are used to support the children and staff of the cardiology ward at The Hospital for Sick Children.

 “Cardiac Kids is important because it provides emotional support to
patients and families living with congenital heart disease. The
opportunity to meet each other outside the hospital setting is so
valuable, especially for those who are early in their journey. Meeting
families with older children who have had similar experiences with cardiac
surgery and hospitalization in a fun and social setting provides hope that
there is light at the end of the tunnel. This is so important in building
resilience and supporting emotional health and well being that contributes
to improved quality of life.”


- Kathleen Einarson RN, MScN, NP-Paediatrics
Nurse Practitioner
The Labatt Family Heart Centre
The Hospital for Sick Children
Chair, Cardiac Kids Committee

Cardiac Kids has touched many lives since its inception, we remain committed to providing fun and social opportunities that contribute to the emotional well being of children with congenital heart disease. To boost the morale of the children and their families, Cardiac Kids has hosted approximately 2000 kids from across Ontario, Quebec and Atlantic Canada at various sporting and social events. In addition, Cardiac Kids provides funding for educational seminars for patients and their families, sponsors Team SickKids at the World Transplant Games, and donated $1,000,000 to Camp Oki the first Canadian camp for kids with heart defects.

Cardiac Kids is a strong supporter of pediatric cardiology nursing education, with the aim of helping provide the best possible care for children who must undergo cardiac treatment. To that end, each year scholarships and conference funding are provided to Cardiac Program nurses to maintain their position at the leading edge of pediatric cardiology nursing.

Colena - meeting John Michael Liles at the Leafs game